Diagnostic Overshadowing – Hazel’s Story
by Alison Morley for DSRF UK (UK, blogger, mum of 2).
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hat is diagnostic overshadowing? Today we’re going to talk about the effect of diagnostic overshadowing in one little girl’s life. But first, what is it? Diagnostic overshadowing is when “symptoms of physical ill health are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person’s learning disabilities” (Emerson and Baines, 2010). It can cause anything from a slight delay in diagnosis to an increased risk of death because someone tells you, for example, “It is normal for Down syndrome children to have low oxygen/not pass stool for days… “ What factors affect the medical care of people with learning disabilities?
“…normal for Down syndrome”
Alison is mum to Hazel. In spite of her very loud gut instincts, she listened to the medical professionals and the well-meaning people of the Down syndrome community. She shouldn’t have. She should have challenged them. She learnt the hard way so you won’t have to…
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makingchromosomescount.co.uk
We feel that this phenomenon is a critical piece in the puzzle when we look at the reasons for the lack of research and the poorer health outcomes in our community. Despite the certainty touted on the Down syndrome awareness memes recently, we can only draw one conclusion when we read each “fact”: This is what we know now. Take, for example, the lifespan meme; why has that increased? Basic medical care, heart repair operations have been made available to those who need it. Here we are in 2021, and much is still unknown about Down syndrome (and its associated conditions) and, therefore, the possible best supportive therapies. Has the book closed on Down syndrome, marking a “full stop” on progress and advances to help our loved ones? No, not if we are looking, learning and investigating the possibilities through medical research. Hazel’s story Hazel is nine years old and has the biggest smile you could ever see. And it is often accompanied by the heartiest belly laugh imaginable. Wherever you are in the house, whatever you are doing, you stop and go see what’s made her laugh. Often you have no idea, but you join in anyway – it’s contagious. Hazel is a joy to be around! Hazel has Down syndrome. She has autism. She also has a feeding tube. She’s still learning to walk, and it’s hard for her. Oh, and she doesn’t talk, at least not with words. When Hazel was born, I remember hoping and praying that she had the “not too bad” version of the condition. The one that we often hear talked about in the Down syndrome community. The one that said she would walk, talk, go to a mainstream school, get a job, get a flat, get married and live happily ever after – the “what’s so Down about that” kind of narrative – that version.
about HEALTH
